Disability Commissioner Paula Tesoriero outlayed her concerns about the End of Life Choice Bill to John Campbell on TVNZ’s Breakfast yesterday morning.

"I'm concerned that the safeguards are woefully inadequate,” she said. “I'm deeply troubled by the fact that this conversation is taking place in the absence of having a wider discussion about adequate disability support services in New Zealand.”

Ms Tesoriero referenced a recent report from the United Nations Special Rapporteur on the rights of persons with disabilities, Ms. Catalina Devandas-Aguilar, on her visit to Canada.

The UN report, published in April 2019, highlights concerns that disabled people are being pressured to consider euthanasia in Canada.

In the report Ms. Devandas-Aguilar said, "I am extremely concerned about the implementation of the legislation on Medical Assistance In Dying from a disability perspective [in Canada].

“There is no protocol in place to demonstrate that persons with disabilities have been provided with viable alternatives when eligible for assistive dying. I have further received worrisome claims about persons with disabilities in institutions being pressured to seek medical assistance in dying, and practitioners not formally reporting cases involving persons with disabilities.” Ms. Devandas-Aguilar added.

David Seymour proposes to limit eligibility to people with either a terminal illness and six months or less to live, or a neurodegenerative condition and 12 months or less to live. Such an amendment may not succeed, because politicians on both sides are likely to vote against it: Those who want the Bill to fail and those who don’t want to discriminate against non-terminally ill people.  

However, even if eligibility were limited to those with terminal or neurogenerative conditions, concerns from the disability community would still be relevant. Terminal illness usually involves disability.

The Bill’s eligibility criteria includes the clause, “in an advanced state of irreversible decline in capability”, which is a description of “disability”.

"When we talk about choice, proponents of this bill talk about it as though everybody exercises their choice from an even playing field, and that is just not the case," Ms Tesoriero remarked.

This sense of burden that comes with choice is acknowledged by many disabled and terminally ill people, and is very real.

TVNZ’s Breakfast posted the interview on their Facebook page.  

In response, a commenter posted, “I don’t want to be a burden on my family. The world has become selfish and greedy. I don’t want to take up my families time and energy that most families don’t have these days let alone financial assistance.”

Another reported, “I am terminal with ALS. These types of laws dehumanise people like me, as if our lives, pain and suffering are somehow less worthy of being experienced compared to any other hard work. They ignore the effects on family and friends, and ignore the opportunity of others to care and show compassion. If laws like this are passed, less effort will be spent finding a cure for ALS.”

Visiting Canadian euthanasia practitioner, Dr Stephanie Green, didn’t think that people who feel like a burden would be allowed to access euthanasia. She said, "If a patient comes and says to me, 'Look, I’m a burden on my family. This is something I feel I need to do for the best for my family,' that's not an eligibility requirement.”

In response Ms Tesoriero pointed out that, "International evidence shows that one of the top five reasons that people request euthanasia or assisted dying is precisely because they feel like a burden on their families.”

There is a distinction between the eligibility criteria and the underlying reasons for requesting death.

In Oregon assisted suicide drugs are available to people with a terminal illness that is likely to end their lives within six months or less.

Feeling like a burden is not one of the eligibility criteria in Oregon. However, according to the 2019 official report, over half of recipients of ‘assisted dying’ cited “concern about being a burden on family, friends/caregivers” as a motivator.”

Alarmingly the most common reasons are related to disability – about the fear of being dependent on support for daily living. About 92% reported concern about “losing autonomy” as a reason. 91% cited concern about “being less able to engage in activities making life enjoyable”. 44% were concerned about “losing control of bodily functions”. 

Only a quarter cited “inadequate pain control or concern about it.”

#DefendNZ encourage MPs to consider the impact the End of Life Choice Bill could have on Kiwis who have life-limiting conditions as well as disabilities – people who are already feeling emotionally vulnerable as a result of the euthanasia debate.